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What to look for next? Hht, tia, pavm and extremity survivors help


#1

We are currently in the picu unit. My daughter had 2 back to back seeming tia episodes a few days ago. She had these episodes 2 years ago, an untreated pavm was thought to be the culprit and after her pavm was embolized, no problems until now. History of 2 Cavs, gamma knife in 2010. Cerebral angio today, all clear. Going for ct angio to check for pulmonary issues but dr. Seems convinced it’s nothing or it’s a behavioral/mental health issue (trying not to get angry about that one because they know nothing about hht or my child who has PTSD from and about medical procedures)
She has had knee problems, has a bakers cyst on one knee and it is very swollen and painful. So far none of the imaging studies have indicated an avm in the knee and I can’t imagine that a clot from the knee would travel to the brain and cause a Tia but I don’t know much about them.
Any thoughts, suggestions or insight?


#2

Christine,

I hope some folk in the @PulmonaryHeartHHT or @Extremity groups can offer help.

As far as I know, a TIA is a blockage of some kind that is thankfully temporary and doesn’t lead on to any tissue death, as being the distinction from an ischaemic stroke which is a more permanent blockage that leads on to some tissue death. Otherwise, I think they are both typically associated with a clot.

Hope others have useful ideas.

Best,

Richard


#3

So yes a clot from an extremity can travel to the heart, lungs or brain. However, the likeliness is less. I would suspect its more likely a clot thrown from a pavm. If the embolization didn’t get EVERY impacted cell AVM can regrow. You did the right thing bringing her in for imaging. Also if she has HHT its VERY possible she has an AVM or VM somewhere else that could have thrown the clot. Did she every have a full body scan MRA? TIA isn’t good especially in such a little person. I would call your specialist and let them know what’s happening and see if they can order any additional tests and get the blood test which tests for clots (I think d-dimer). Keep fighting for her! You’re doing an awesome job Mom! You know it isn’t in her mind they tried to tell me that too even when they had the imaging evidence to prove it wasn’t in my mind. Teacher her to be an advocate so when she grows up she knows that she knows her body best and not every doctor is always right especially about rare medical conditions! Hang in there!